PPMD Community2020-06-07T10:24:36ZLuis Corderohttp://community.parentprojectmd.org/profile/LuisCorderohttp://storage.ning.com/topology/rest/1.0/file/get/2186586923?profile=RESIZE_48X48&width=48&height=48&crop=1%3A1http://community.parentprojectmd.org/forum/topic/listForContributor?user=1m8u80hl08iln&feed=yes&xn_auth=noDuchenne Boy Looking for PlayStation Buddies to Play Games Withtag:community.parentprojectmd.org,2020-03-20:1187424:Topic:2595502020-03-20T18:51:10.916ZLuis Corderohttp://community.parentprojectmd.org/profile/LuisCordero
<p>Our 10-year-old son, Liam, would like to find some new buddies to play some games on his Playstation4. He likes NHL 20, Apex Legends, Star Wars Battlefront 2, MLB The Show, Madden NFL 20, Fortnite, Destiny 2, and Minecraft. He's had some run-ins with some older boys (friends of friends) who are sometimes mean, so I thought if he found some other Duchenne boys and siblings he'd have better luck. His PS4 username is <strong>TyphoonLiam</strong>.</p>
<p>Thanks!<br></br> Jeff Kopp<br></br> St. Louis,…</p>
<p>Our 10-year-old son, Liam, would like to find some new buddies to play some games on his Playstation4. He likes NHL 20, Apex Legends, Star Wars Battlefront 2, MLB The Show, Madden NFL 20, Fortnite, Destiny 2, and Minecraft. He's had some run-ins with some older boys (friends of friends) who are sometimes mean, so I thought if he found some other Duchenne boys and siblings he'd have better luck. His PS4 username is <strong>TyphoonLiam</strong>.</p>
<p>Thanks!<br/> Jeff Kopp<br/> St. Louis, MO</p>
<p><a href="https://storage.ning.com/topology/rest/1.0/file/get/4171073817?profile=original" target="_blank" rel="noopener"><img src="https://storage.ning.com/topology/rest/1.0/file/get/4171073817?profile=RESIZE_710x" class="align-full"/></a></p> Success Stories for exon 52 drugtag:community.parentprojectmd.org,2020-03-12:1187424:Topic:2594562020-03-12T14:33:09.990ZLuis Corderohttp://community.parentprojectmd.org/profile/LuisCordero
<p>Has there been any studies on how the exon 52 approved drug is doing?</p>
<p></p>
<p>I believe it has been on the market for 3 years .</p>
<p>Has there been any studies on how the exon 52 approved drug is doing?</p>
<p></p>
<p>I believe it has been on the market for 3 years .</p> Pinball World Record Fundraiser in San Francisco, April 18th and 19th!tag:community.parentprojectmd.org,2020-02-10:1187424:Topic:2594312020-02-10T22:35:56.369ZLuis Corderohttp://community.parentprojectmd.org/profile/LuisCordero
<p>Hi everybody! I'm Jeffrey and I'm going to do something Crazy on April 18th at the Free Gold Watch pinball arcade in San Francisco!</p>
<p>I am going to attempt to break the current world record for the longest time playing pinball, and I am using this event as a fundraiser for PPMD!</p>
<p>All of the details about this bonkers event are here in my blog post:</p>
<p><a href="http://needlepictures.com/tbd/2020/02/05/33-hours-of-pinball-yes-really/" rel="noopener" target="_blank">33 Hours of…</a></p>
<p>Hi everybody! I'm Jeffrey and I'm going to do something Crazy on April 18th at the Free Gold Watch pinball arcade in San Francisco!</p>
<p>I am going to attempt to break the current world record for the longest time playing pinball, and I am using this event as a fundraiser for PPMD!</p>
<p>All of the details about this bonkers event are here in my blog post:</p>
<p><a href="http://needlepictures.com/tbd/2020/02/05/33-hours-of-pinball-yes-really/" target="_blank" rel="noopener">33 Hours of Pinball. Yes, really!</a></p>
<p>My PPMD fundraising page is here:</p>
<p><a href="http://join.parentprojectmd.org/site/TR?px=1715091&amp;fr_id=4992&amp;pg=personal" target="_blank" rel="noopener">Jeffrey's 33 Hours of Pinball Fundraising Page</a></p>
<p>I also have a Facebook page for this event, in which I fundraise and post updates and links:</p>
<p><a href="https://www.facebook.com/33-Hours-of-Pinball-113872143494741/" target="_blank" rel="noopener">33 Hours of Pinball Facebook Page</a></p>
<p>If anyone is the in the San Francisco Bay Area and would like to help me out with fundraising and especially helping me out with the World Record Attempt, (I will need monitors as per Guinness Book of World Record rules, plus if someone could bring me a coffee now and then that would also help,) feel free to email me at jephmat@gmail.com. Just put PPMD 33 in the subject line!</p>
<p>FYI: I do not have a family member with Duchenne, but I personally know someone with Duchenne. He's the son of two dear friends of mine and I want to help him, them, and all of you combat this disease.</p>
<p>And please ask questions if you like! I am looking forward to this nutty event!</p>
<p></p> Manifesting carrierstag:community.parentprojectmd.org,2020-01-27:1187424:Topic:2595912020-01-27T23:30:23.680ZLuis Corderohttp://community.parentprojectmd.org/profile/LuisCordero
My son and I have deletion of 10-16. I am symptomatic. Not sure what to do. I have always been very active. After my son was born I started to experience exercise intolerance in 2003. I work as a nurse and am terrified of not being able to work. Anyone with similar situation? I live in Kalispell Montana.
My son and I have deletion of 10-16. I am symptomatic. Not sure what to do. I have always been very active. After my son was born I started to experience exercise intolerance in 2003. I work as a nurse and am terrified of not being able to work. Anyone with similar situation? I live in Kalispell Montana. Experience of living with DMDtag:community.parentprojectmd.org,2019-11-08:1187424:Topic:2585922019-11-08T18:40:06.015ZLuis Corderohttp://community.parentprojectmd.org/profile/LuisCordero
<p><span style="font-size: 12pt;">Hi,</span></p>
<p><span style="font-size: 12pt;">My name is Averill and I am training to become an Occupational Therapist. I wa wondering if I could ask you guys about your experience with health professionals especially OT?</span></p>
<p><span style="font-size: 12pt;">Have you had a positive experience with your OT's have they provided you with tools for an enhancement to your daily living?</span></p>
<p><span style="font-size: 12pt;">Have you had a negative…</span></p>
<p><span style="font-size: 12pt;">Hi,</span></p>
<p><span style="font-size: 12pt;">My name is Averill and I am training to become an Occupational Therapist. I wa wondering if I could ask you guys about your experience with health professionals especially OT?</span></p>
<p><span style="font-size: 12pt;">Have you had a positive experience with your OT's have they provided you with tools for an enhancement to your daily living?</span></p>
<p><span style="font-size: 12pt;">Have you had a negative experience?</span></p>
<p><span style="font-size: 12pt;">Is there anything you look back on and wish your OT had done differently?</span></p>
<p></p>
<p><span style="font-size: 12pt;">Many Thanks</span></p>
<p><span style="font-size: 12pt;">Averill</span></p> FDA: Approve Vyondys 53 (Golodirsen) for the treatment of Duchenne Muscular Dystrophytag:community.parentprojectmd.org,2019-09-20:1187424:Topic:2581202019-09-20T23:42:52.738ZLuis Corderohttp://community.parentprojectmd.org/profile/LuisCordero
<p><span style="font-size: 18pt;">Hello everyone! If you have a moment, please consider signing my petition to approve Vyondys 53 (Golodirsen) for the treatment of Duchenne Muscular Dystrophy.…</span></p>
<p></p>
<p><span style="font-size: 18pt;">Hello everyone! If you have a moment, please consider signing my petition to approve Vyondys 53 (Golodirsen) for the treatment of Duchenne Muscular Dystrophy.</span></p>
<p><span style="font-size: 18pt;"><a href="https://www.change.org/p/food-and-drug-administration-approve-vyondys-53-golodirsen-for-the-treatment-of-duchenne-muscular-dystrophy-2" target="_blank" rel="noopener">https://www.change.org/p/food-and-drug-administration-approve-vyondys-53-golodirsen-for-the-treatment-of-duchenne-muscular-dystrophy-2</a></span></p> Osteoporosistag:community.parentprojectmd.org,2019-05-03:1187424:Topic:2574902019-05-03T15:53:09.294ZLuis Corderohttp://community.parentprojectmd.org/profile/LuisCordero
<p>My son, 18 years old, had a fall and fractured his femur 9 months back. He was walking well before this and now he is trying hard to walk independently again. He has fallen a couple of times after the fracture and scared he might fracture himself again. Can anyone suggest some kind of foam mats to absorb the force of the fall, in case he falls, as he is really losing strength day by day. Thanks in advance.</p>
<p>My son, 18 years old, had a fall and fractured his femur 9 months back. He was walking well before this and now he is trying hard to walk independently again. He has fallen a couple of times after the fracture and scared he might fracture himself again. Can anyone suggest some kind of foam mats to absorb the force of the fall, in case he falls, as he is really losing strength day by day. Thanks in advance.</p> Wait four months to join clinic trial or start with prednisone nowtag:community.parentprojectmd.org,2019-03-18:1187424:Topic:2559542019-03-18T23:12:07.099ZLuis Corderohttp://community.parentprojectmd.org/profile/LuisCordero
<p>My son Max was diagnosed with DMD less 2 weeks ago. It was hell to swallow this while keep tracking all relevant information for his treatment. </p>
<p>We now face a dilemma and would like to hear your suggestions based on your experiences. Max is 4 and since he has not taken any medication he is eligible for two clinic trials in UC Davis where the medicine in test are supposed to have less side effects - called Vamorolone and Catabasis if anyone came across it. Both trials are for about 1…</p>
<p>My son Max was diagnosed with DMD less 2 weeks ago. It was hell to swallow this while keep tracking all relevant information for his treatment. </p>
<p>We now face a dilemma and would like to hear your suggestions based on your experiences. Max is 4 and since he has not taken any medication he is eligible for two clinic trials in UC Davis where the medicine in test are supposed to have less side effects - called Vamorolone and Catabasis if anyone came across it. Both trials are for about 1 year. </p>
<p>The issue is Max will be out of country this summer for about 2 months, so if we want to register him for the clinic trails he wouldn't be able to start until August. That means waiting for 4 months without taking prednisone as it will DISQUALIFY him from the trials. </p>
<p>Shall I wait for it or start with prednisone right away? He is young and so far no obvious difficulty in mobility, but easy to fall and cannot run much nor jump. How important is it to start meditation as soon as possible, especially knowing there are side effects? Does it worth delaying his meditation for four months for the POTENTIAL benefits of clinic trials? Please feel free to share your thoughts and experience. As a heart-broken father, any words from this community will help. </p>
<p>Thanks a lot! </p>
<p>Tao</p> Anybody with a large deletion?tag:community.parentprojectmd.org,2019-01-30:1187424:Topic:2553882019-01-30T17:48:38.289ZLuis Corderohttp://community.parentprojectmd.org/profile/LuisCordero
<p>Hi,</p>
<p>My son was diagnosed with duchenne at the age of 1.5 years. He has very large deletion(2-44). He is currently 7 years of age and on power chair, he stopped walking at the age of 51/2 years. He is not able to use his upper body as well, meaning he cannot lift his hands at all. </p>
<p>Anyone else with such large deletion and having similar issues with upper body?</p>
<p>I wanted to know if there is anything specific that can be done in such scenario to ease our son`s…</p>
<p>Hi,</p>
<p>My son was diagnosed with duchenne at the age of 1.5 years. He has very large deletion(2-44). He is currently 7 years of age and on power chair, he stopped walking at the age of 51/2 years. He is not able to use his upper body as well, meaning he cannot lift his hands at all. </p>
<p>Anyone else with such large deletion and having similar issues with upper body?</p>
<p>I wanted to know if there is anything specific that can be done in such scenario to ease our son`s life?</p>
<p>Any trial he can participate?</p>
<p>We are based out of Dallas.</p>
<p>Thanks in advance</p>
<p>Ashok Sangwan</p>
<p></p> entering the toilettag:community.parentprojectmd.org,2018-12-10:1187424:Topic:2523702018-12-10T16:33:14.208ZLuis Corderohttp://community.parentprojectmd.org/profile/LuisCordero
<p>greetings</p>
<p>my son now suffers when he wants to go to the toilet when he is in school. is there any ideas about facilitating this issue for him please. forexample does the electric standing wheel chair would help in such situations.</p>
<p>thanks and best regards</p>
<p></p>
<p>greetings</p>
<p>my son now suffers when he wants to go to the toilet when he is in school. is there any ideas about facilitating this issue for him please. forexample does the electric standing wheel chair would help in such situations.</p>
<p>thanks and best regards</p>
<p></p>